Miserable, Sick, Scared & Confused

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New Member

Date Joined Jan 2010
Total Posts : 18
   Posted 8/17/2011 10:26 PM (GMT -6)   
I know this is going to be long, but I will try very hard to keep it short as possible.  First of all, let me say, I was dxed with lupus in 2000.  At times, there have been some doubt, but then mostly it's very clear I do have lupus, without a doubt.  Then sometimes my rheumy will say "You shouldn't have those symptoms with lupus. Never heard of that with lupus or none of my other lupus patients have ever mentioned something like that."
I'm going to shorten this even shorter & leave out my lupus symptoms as my arms are so tired & hands so shakey, it's very hard to type right now. Can go into further detail later. Please ignore my typos and spelling & other errors as my brain does not work right anymore either.
about 3 1/2 yrs ago, on good days I could easily walk 2 miles and those good days might last a few weeks or even a month or two. Then one afternoon in October I was raking leaves and I had raked about 15 - 20 minutes, when I became very hot, profusely sweating all over.  I became very weak (again an all over weakness, but legs especially tired & heavy feeling) and shaking badly.  Hubbie not home & had to call my brother to come & help me inside. At this time, I thought my lupus was flaring up, but it was not the norm for me, but again, lupus flare-ups can be different sometimes.  I felt I needed a shower, but was to weak, so just undressed and put on something cooler and filled the ice bag with ice and kept applying it to different areas, while sitting in frt of a fan and under a ceiling fan trying to cool off.  I was very sleepy, and did drift off to sleep.  I slept rest of afternoon and through the night.  This was the start of a new era. 
From that day forward, my body overheats all the time.  I take either cold or cool showers. A warm shower will make me weak, shakey and nauseated.  I could no longer take my walks. I tried over & over to take my walks, but failed at each attempt.  I would get way to tired and weak, so just finally gave up.  In November, I had one of the worst lupus flare-ups I have ever had.  I explained these new symptoms to my rheumy at my next visit, to which he stated, "this doesn't sound like lupus to me", and let it go.  Since then, I have not felt well at all and my lupus flare ups have become continous.  None of the meds have worked for me, other than prednisone and usually have to take 40-60 mgs to get it under control. 
Fast forward to July 3rd, this year.  Was very cool early that morning and I decided to pull a few weeds from a flower bed. A bed about 4' X 4', so very small.  Since it wasn't that many weeds, I leaned over to pull them.  Then a much larger area, but minimal weeds.  All together, outside for about 30 - 45 min.  Had to stop because all of a sudden, my legs and arms became very weak.  Of course, I was sweating like crazy because no matter how cool it is, my body will overheat big time.  I was shaking so bad, I could hardle rinse my hands.  My husband was still sleeping, this was like 6 AM, and it was almost impossible for me to make it inside.  I lay on the sofa under the ceiling fan and prayed it would go away.  It didn't.  The rest of the day, I had to lay down, my legs were to weak and heavy to walk. 
The next morning, when I got up, I thought I would try a shower. I have a seat in my shower, so I knew I could sit down if I got to weak, which of course I did.  My arms were so weak, it was hard to wash my hair.  Had to get my husband to help me out of the shower and put on clean pjs, as I was headed back to bed.  Well, about that time, my heart started racing really bad.  Then I figured my potassium must be low, as it does drop sometimes and that was my whole problem.  We went to ER, and everything checked out normal.  The ER doc suggested I see a neurologist. I also had been having muscle cramps and spasms for months, especially at night.  I even got cramps in the musles in my back.  I also would get these jabs of pain in the rh side of back that was like a lightening strike or felt like a jagged knife cutting from under shoulder blade to below ribs.  The doc gave me an injection of solu medrol and said maybe it was a lupus flare up and to start my round of prednisone.
Back to ER in 3 days, with heart racing again and weakness seemed to be worse.  My hands shook so badly, I could not sign my name.  This time, I was admitted.  My potassium was low and they wanted to have cardiologist take a look at me also.  Went through the cardio work up, which checked out fine.  Since given potassium, my heart has not raced any more.  My fatigue level is off the charts, but have been for a long time.  I can say, it is much worse, which puts me down almost every day.  My afternoons are horrible and my naps can be 3 - 6 hrs long. 
My primary doc checked me out & found I definitely have muscle weakness in both legs, especially rh one.  Said my strength in arms is pretty good and very concerned about tremors, bad tremors.  I have had mild tremors for years and was being treated by a mild dose of a beta blocker for that, which seems to not work anymore.  I cancelled my neuro appt because I have to many medical bills right now. I am on disability and was already paying hospital monthly pmts because of hospitalization last yr.  I have had to see gastro doctor because of problems with stomach.  Seeing another doctor because of bladder issues and it's to much. 
Now, yesterday, I vacuumed whole house downstairs. (2000 sp ft.)  Usually break it up into 3 days, but had not vacuumed in a month & have 2 cats.  I felt okay yesterday and never got the weakness problems.  I was ready for bed at 8 PM because I was so tired, and did not sleep well at all.  Legs just heavy and knees hurt badly.  Now today, had to go have lab work done and afterwards went to Sam's. We picked up a few things and walked around in store for about an hour. Came home and after being at home for about an hour, the weakness in legs & arms are hear again.  My arms feel like they are going to fall off and they sort of burn inside. I have the shakes so bad, I tried to eat popcorn earlier and it was hard to pick up the popcorn & get it to my mouth.  Felt like my fingers were chasing the popcorn around the bowl. When walking, feel like my legs are going to collaspe, they are so weak.  Feels liek my muscles have died.  It's definitely in the muscles, I can really feel them.  Tehy don't hurt, they just don't feel right.
Ok, got to wind this up, really having a hard time.   SX are:
1. Have episodes of my head going numb. 
2. Numbness & tingling in hands and feet.
3. Bottom of my feet burn like walking on hot coals.  Not a stinging burn, like a hot burn, like the whole bottom of feet are very very hot.
4. Always looking to see what's crawling on me & there is nothing. 
5. Sometimes feels like a wet washcloth is laying on me in different areas, but mostly on leg above ankle.
6.  Had 2 episodes of what the doc called "iritis" in past yr. But he said it wasn't typical of iritis, but didn't know what else to call it.  I had enormous pain in my eyeball. Drops of "prednisone" cleared it right up.  Already been dxed with optic nerve damage in rh eye &  this was the eye with painful eyeball. 
7.  Major incontinece problem, and now since June, have had episodes of not being able to control bowels either.
8. Get the slurred speech, but thought it was because I get to tired. Everyone talks about this and says, "you're talking weird, don't understand what you're saying".
I think that's all, but I don't know at this point.  I know I have lupus, have positive ANA plus other positive tests. The lupus dx has been confirmed by other rheumatologists as well. Highly photosensitive, get rash all over like measles and get violently ill.  I get malar rash on face, severe joint pain & of course unbelievable fatigue.
I know the two can be misdiagnosed a lot because they are so similar.  Really getting scared now, because from reading here, it sounds liek it is highly likely I probably od have MS. Any thoughts on this would greatly be appreciated. I apologize for this being so long.  Just wanted to give you the best picture I could.  Thanks in advance for any help you can offer.

Post Edited (Rovngypsy) : 8/17/2011 10:33:33 PM (GMT-6)

Forum Moderator

Date Joined Jan 2007
Total Posts : 3553
   Posted 8/20/2011 12:59 PM (GMT -6)   
It is possible to have Lupus and MS. We've had members here with both. Make an appointment with a neurologist. After a thorough neurological exam in which he/she will be looking for abnormal reflexes and responses that could indicate MS or other neurological disorder, the doctor may order an MRI of your brain. I recommend you find an MS specialist. Call your local MS Society office for a list.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

New Member

Date Joined Aug 2012
Total Posts : 1
   Posted 8/10/2012 1:47 PM (GMT -6)   
Wow, that is almost identical to my situation, as far as the heat, sweating, weakness and shaking. That started happening to me three summers ago when I was outside gardening, and once it happened it was like a light switch was flicked and never turned off. I thought it was heat exhaustion, but that doesn't last three years. I had my lupus diagnosis this year.

Regular Member

Date Joined May 2012
Total Posts : 118
   Posted 8/12/2012 7:33 AM (GMT -6)   
Once you have one chronic disease, you are at greater risk for another. I have MS and Crohns.

New Member

Date Joined Aug 2012
Total Posts : 2
   Posted 8/13/2012 8:38 PM (GMT -6)   
i got dx with lupus in 2001 my flare lasted 2 years.then it went away for 11 years no symptoms at all
this past year i had problems with my legs thought nothing of it.then i had problems swallowing and choking on my food i still didnt go to the dr.now its my arms, legs, feet fingers that burn. i went to the dr finally and got blood work done i still have the lupus but i have ms too.i started on 50 mg of prednisone the highest i ever have been on and just waiting for that feeling of being superwoman again when it kicks in at least that is what prednisone did with my lupus flares. take care all carol

New Member

Date Joined Aug 2012
Total Posts : 2
   Posted 8/21/2012 8:43 PM (GMT -6)   
You definately may have the dreaded 2x + affliction and need an MS spinal tap or MRI. Truthfully,yes, it sounds like it could be MS.

New Member

Date Joined Aug 2012
Total Posts : 2
   Posted 8/21/2012 8:43 PM (GMT -6)   
You definately may have the dreaded 2x + affliction and need an MS spinal tap or MRI. Truthfully,yes, it sounds like it could be MS.
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